How would you feel if, every month, a section of your lung began to grow in your arm, your leg, or even your eyes? Every time you breathe, that piece behaves the same way as a lung, inflaming and contracting in places it is not designed for. Imagine that pain, a part of your body being in the wrong place, acting independently, disrupting other organs from functioning. That is how life feels for women with endometriosis.
A damning new report was released on Wednesday by the House of Commons Women and Equalities committee chair Sarah Owen, who stated:
“There is medical misogyny, particularly when it comes to women’s reproductive health, and we know that women are constantly fobbed off and being told that their pain is normal, or excusable…one in three women are affected by heavy menstruation, one in ten women are affected by adenomyosis or endometriosis and with endometriosis it is taking up to eight years on average for a diagnosis let alone treatment.”
So, what is this mysterious condition? Why is it now being talked about, and how come 54% of people still don’t know what it is? A recent interview with Lois Balshaw, founder of reproductive and chronic illness advocates organisation ‘The Code Red Club’, allowed me to explore the nuances of endometriosis and its effects on love and sex for the people who experience it.
Endometriosis is a full-body, chronic pain condition that was listed as one of the top 20 most painful conditions to exist by the NHS in 2023. It occurs when tissue similar to uterine tissue grows in any other areas of the body. Endometriosis has currently been found in every major organ in the body, including the lungs, brain and, for me, my skin. This can result in immense levels of pain, infertility and permanent organ damage if left untreated. Currently, endometriosis is known to affect approximately 1 in 10 women of reproductive age in the UK and 10% worldwide. However, Lois Balshaw, founder of the Code Red Club, says these statistics may soon be changing:
“How many people have endometriosis? It’s looking more about 2 in 10…or 1 in 7”
Lois first speculated if she had endometriosis when her student biology teacher noticed how often she struggled with pain during lessons. Her pain resulted in the inability to concentrate on her education, sometimes having to sit with her head on the table because staff were unable to send her home for period cramps. When Lois first approached her GP for help, she was immediately put on the combined contraceptive pill “like every girl”. However, that’s when her pain went from severe to constant:
“My pain started to happen every day…and I’m thinking, oh, this is not right. And [the GP said] no, stay on it for a bit because you have to do three to six months…to let it settle in”
When first going on the pill myself, I experienced faintness, dizziness, nausea, bloating, headaches and extreme mood swings, causing me to become severely anxious and isolated from my life for the first four weeks of treatment. After talking to other women, their experiences have generally followed the same trajectory. In 2022, 17% of women aged 15-49 used the pill as their primary form of contraception, with the UK having one of the highest rates of contraception use in the world (72% of women of reproductive age). Unfortunately, there is no real statistical evidence on how many women are put on the pill each year for severe period pains, but it is clear that the pill is a popular pharmaceutical choice. Therefore, it is highly likely that millions of women are put on contraceptives, feeling horrendous effects, with doctors dismissing them, encouraging continuation of the treatment for up to six months. Lois notes this dismissal in her acknowledgement of continuing to show up and advocate for herself:
“I think a lot of women…give up…you can’t give up, you have to keep going with it… [know that] there are things that these doctors can do for you, there are things, they’re just choosing not to do them.”
After the pill failed, Lois was diagnosed with dysmenorrhea, the medical term for severe period pain, and was eventually referred for a laparoscopy. Lois’s laparoscopy found endometriosis in her Pouch of Douglas and left her with a diagnosis of endometriosis after three years of continued doctors’ appointments, fighting to be heard. This frustration, expressed by Lois, reflected a lack of love and care she felt she had received from her GPs and a general lack of other people understanding her pain:
“It’s so sad that we have to prove how ill we are…it can be so isolating so, you kind of try and downplay how ill you are when you go out with…friends and family [and so] when you go to an appointment because you deal with it so well in everyday life, [people] don’t believe how much pain you’re in…it’s so damaging”.
Lois saw great importance in the love and care she got from her support system, built by her family and friends, when in the process of getting diagnosed with endometriosis. Lois admits to being very lucky to have people in her family who had experienced painful periods and chronic illnesses and who validated and understood her feelings and experiences. But despite this, she notes how things changed once she got her diagnosis, almost proving that love was “conditional”. Getting her diagnosis confirmed “something” in people’s minds, stopping them from questioning her pain and viewing her as a “hypochondriac”. However, despite not understanding why people believed her more with the word of a doctor supporting her, “especially with how many mistakes doctors make”, a diagnosis for Lois made her feel “less crazy”.
In the coming weeks, I will investigate how love and care differed for Lois in her history with endometriosis, in the context of partners and relationships, friends and family and wider society as well. In doing so, I will reflect on my own experiences with endometriosis and how debilitating this invisible chronic illness can be in women’s lives.
There are many significant spiritual, sociological and emotional catalysts in fighting for a diagnosis of endometriosis. Women spend up to 10 years back and forth between GPs and hospital appointments, trying treatments that can confuse and disassociate them from their bodies and lives before they receive a diagnosis. During this time, they also experience a lack of understanding and care by their teachers, their doctors and even their friends and families of their symptoms. This majorly affects the ways these women view and experience care and love by society. Therefore, I ask you, how much longer will millions of women have to perish in isolating silence before someone says enough is enough; what does that say about us and how we love and care for our women, who are our society?
Featured Image: ‘Trying to Find You 1’, by Tracey Emin
Article Image: Lois Balshaw, founder of ‘The Code Red Club’